A text by Henry-Alexander’s mom

 

First off, I would like to introduce you to our amazing son, Henry.

Henry is almost 14 now.  He is a very happy kid who loves music, Robert Munsch books, spending time in water, camping, skiing, horseback riding and the Wii.

He loves to laugh and joke with people.  He has a switch that you can record messages on, and he takes a joke to school every day to tell his friends.

He has cerebral palsy, epilepsy, cortical visual impairment and developmental delay.  When Henry was born we found out that he had developed periventricular leukomalacia (a bleed in the brain) 2 to 3 weeks before his birth.

We didn’t know what that would mean for him but soon realized that he was not developing in the same way his older sister had.  When he was 6 months old he started to have seizures.  We managed to get them under control and had 1.5 years without any.  Then they started to come back.

Watching your child lose skills is one of the hardest things we have had to deal with as parents.  It breaks your heart.

Despite everything, he was a determined and happy child with an infectious laugh.

He was working on communicating with us and had learned quite a few words, was learning to walk in a special walker and was figuring out how to propel his own manual wheelchair.

In 2012 over the course of a summer, Henry’s seizures changed, and he started having hundreds of atypical absence seizures a day.  He was unable to hold his head up, lost the ability to speak and couldn’t push his wheelchair anymore.  It was at this point that he was diagnosed with Lennox Gastaut syndrome.  We tried multiple drugs and put him on the ketogenic diet, including placing a G-tube, to try and control the seizures,with limited success.  At that point that we were referred to Roger Neilson House.

Over the last few years we have been able to control his seizures a little more and he has started to talk again but not like he did before 2012.  He has some really good days where he is alert and “on fire” with words and activity and then days where he is very tired and it’s hard to get a response from him.

Donations to the 24h: a major impact on our family’s daily life

Roger Neilson House (RNH) has been an amazing support to us since 2013.  We had very mixed feelings, walking into the house for the first time.  It was immediately obvious to us that it was a giant home filled with immense joy and we knew that Henry would love spending time there, but the reality of being accepted into a place that provides pediatric palliative care also comes crashing down on you.  We have met so many other parents who understand the complexities of caring for a child who is medically fragile and have found great comfort in that.  Sadly, we have also had to celebrate the too-short lives of several of our friends’ children.

Our other two children, Claire (16) and William (11), have been able to meet kids from other families in similar situations.  It can be hard as a kid when you need to cancel activities, leave events early or have the calendar revolve around your sibling with special needs and what he needs to keep him healthy and safe.

RNH also provides us with respite, so that we are able to spend more time with our other children, doing things that are more difficult to do with Henry. We are also able to call a physician 24 hours a day, which has meant that we don’t always need to go sit in the ER for hours.

Donations to Tremblant’s 24h will directly affect the programs and services available to our family and other families at Roger Neilson House.  The money means that they can continue to provide respite services, pain and symptom management, parent and sibling groups, summer camp, and other programs like the bereavement support groups.

We are super excited to go to the 24h event!  We are not sure how Henry feels about being a rock star but as long as Bohemian Rhapsody is on the playlist we are sure he will have a fun time!  He will be very excited to get on the slopes.